16 yrs and 16 doctors

[paintergal]

When I was 12 I began becoming depressed.  I would not sleep more than maybe 4 hrs a night until I was 18 and started taking meds for bipolar.  Although they helped, my insomnia cont.  When I was 18 I began having mild, infrequent muscle weakness in my legs with a shaky feeling inside of them.  This continued until I was 24 and began working in a nursing home as a CNA which at that point it began increasing from maybe every few months to several times a month and alittle more severe all the while I have had insomnia on and off since I was 12.  When I had my son 7 yrs ago I tok a turn for thw worse.  I had post partum hyperthyroidism which lasted 8 months and made the muscle weakness a daily event along with the tachy that goes with the hyper thyroid.  My legs buckled and my arms hung at the shoulders, my feet would go numb.  My son for two months did not sleep more then 2 hrs in  a 24 hour period due to health issues and of course I did not sleep AT ALL.  Over the last 7 yrs the weakness has been terrible along with the studdering, swallowing and chewing difficulties, spacing out but knowing my surroundings, sleep paralysis, VERY real nightmares and dreams, eatting bowls of cereal at night and not knowing it until I wake, at on/ off bouts of tachy.  Been through every test(mri, catscan, mra, ekg,eeg,emg, etc.)  including a sleep test which said my REMs were normal, but I fell asleep in less then 3 minutes each time( during the nap phase)  and had no idea how long I slept...so narcolepsy was ruled out.  But they told me to take my regular sleep aide before I went to bed that night andthen was told it could have screwed up my REMS.  I am always yawning and tired and have fallen asleep at the wheel  a few times,and am a big afternoon napper,  but over all I fair well staying awake.  Could this still be Cataplexy and Narc?  Or should I still lean towards another neuro diagnosis?

[Suri123]

Hi, its very usual to get stressed out when someone has a very long standing illness without much relief. Hope you will do well and have good sleep. How about your recent consultations and progress. Pls keep updating. Take care.

[scarlet37]

Although your doc may tell you it's this or not it is important to keep a home file of all tests and labs done, especially in this type of situation.

Please do a search of idiopathic hypersomnia, while it is not Narcolepsy it certainly is a close relative and most narcoleptics claim it is N in the making.

Sleep deprivation can cause the above symptoms and it looks as if you have quite a long sleep debt. Also too not having thyroid levels in check can aggravate it all. Have you had a recent test? Have you been checked for auto immune disorders too?

Keep posting with your progress.

Best Wishes